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      Commoning genomic solidarity to improve global health equality

      review-article
      1 ,
      Cell Genomics
      Elsevier
      gene therapy, sovereignty, solidarity, Global South, health equality, governance, private venture, commoning, commons

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          Summary

          This article underlines two key asynchronies between prevailing governing logic and expanding practices in somatic human genome editing that are hindering an effective and orderly translation of the new technology into public good. The first is a “genomic sovereignty” framing adopted by a number of non-Western countries that may exacerbate data biases in global research and that directs policy attention away from the necessary structural changes required to achieve non-discriminatory and equitable genomic healthcare. The other is a global deficiency in attending to “science at large”: the challenge of regulating new assemblages of societal interests that advocate controversial or experimental research, often outside of conventional institutions and aided by “policy shopping.” Both issues point to the fact that genomic research does not represent a well-defined scientific commons but rather a domain that requires active “commoning,” with the aim of fostering genomic solidarity that coordinates responsible research within and across national boundaries.

          Abstract

          In this perspective, Zhang presents the view that “genomic sovereignty” framing for policies around genomics research is not helpful for global collaboration and progress. Fostering genomic solidarity across national boundaries is an approach that can promote responsible research in gene editing technology and genomics in general.

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          Most cited references31

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          Genomics is failing on diversity.

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            GA4GH: International policies and standards for data sharing across genomic research and healthcare

            Summary The Global Alliance for Genomics and Health (GA4GH) aims to accelerate biomedical advances by enabling the responsible sharing of clinical and genomic data through both harmonized data aggregation and federated approaches. The decreasing cost of genomic sequencing (along with other genome-wide molecular assays) and increasing evidence of its clinical utility will soon drive the generation of sequence data from tens of millions of humans, with increasing levels of diversity. In this perspective, we present the GA4GH strategies for addressing the major challenges of this data revolution. We describe the GA4GH organization, which is fueled by the development efforts of eight Work Streams and informed by the needs of 24 Driver Projects and other key stakeholders. We present the GA4GH suite of secure, interoperable technical standards and policy frameworks and review the current status of standards, their relevance to key domains of research and clinical care, and future plans of GA4GH. Broad international participation in building, adopting, and deploying GA4GH standards and frameworks will catalyze an unprecedented effort in data sharing that will be critical to advancing genomic medicine and ensuring that all populations can access its benefits.
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              Has the biobank bubble burst? Withstanding the challenges for sustainable biobanking in the digital era

              Biobanks have been heralded as essential tools for translating biomedical research into practice, driving precision medicine to improve pathways for global healthcare treatment and services. Many nations have established specific governance systems to facilitate research and to address the complex ethical, legal and social challenges that they present, but this has not lead to uniformity across the world. Despite significant progress in responding to the ethical, legal and social implications of biobanking, operational, sustainability and funding challenges continue to emerge. No coherent strategy has yet been identified for addressing them. This has brought into question the overall viability and usefulness of biobanks in light of the significant resources required to keep them running. This review sets out the challenges that the biobanking community has had to overcome since their inception in the early 2000s. The first section provides a brief outline of the diversity in biobank and regulatory architecture in seven countries: Australia, Germany, Japan, Singapore, Taiwan, the UK, and the USA. The article then discusses four waves of responses to biobanking challenges. This article had its genesis in a discussion on biobanks during the Centre for Health, Law and Emerging Technologies (HeLEX) conference in Oxford UK, co-sponsored by the Centre for Law and Genetics (University of Tasmania). This article aims to provide a review of the issues associated with biobank practices and governance, with a view to informing the future course of both large-scale and smaller scale biobanks.
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                Author and article information

                Contributors
                Journal
                Cell Genom
                Cell Genom
                Cell Genomics
                Elsevier
                2666-979X
                28 September 2023
                11 October 2023
                28 September 2023
                : 3
                : 10
                : 100405
                Affiliations
                [1 ]Centre for Global Science and Epistemic Justice, Division for the Study of Law, Society and Social Justice, University of Kent, Canterbury, UK
                Author notes
                []Corresponding author yz203@ 123456kent.ac.uk
                Article
                S2666-979X(23)00219-7 100405
                10.1016/j.xgen.2023.100405
                10589616
                37868031
                50397496-6a66-44e4-b719-1db997ec66fc
                © 2023 The Author(s)

                This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).

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                gene therapy,sovereignty,solidarity,global south,health equality,governance,private venture,commoning,commons

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